Caitlin foot surgery!

Hello everyone!

Long time, no post! Sorry! It has been really crazy at my house now that the boys are older and in so many activities. Not all the same which makes it even harder. Driving the 3 boys to all their different things and then Caitlin to her appointments leaves so little time for me...and I am trying to set a good example of not being on the computer all the time...probably failing at that though, lol!

I think I have not posted since her spine surgery...it went well! Her curve went from 80 degrees to 17 now. So much straighter! Her recovery was rough and took many months but she is doing fantastic now! So much so that this summer when we had her orthopedic follow-up, I asked about her twisted feet. Of course they said they could fix them surgically so we said yes please and booked the surgery for January 11, 2017. Those 5 months flew by and here we are now, in the hospital!

She was originally going to have "bilateral foot reconstruction with tendon lengthening and possible osteotomies" but when the surgeon looked at her feet after she was put to sleep, they were still very tight (which was not a surprise to me at all). He had his partner pop in and take a look and the partner suggested instead doing a talus bone removal which would automatically allow the tendons to relax. He came out and discussed it with me and I said to do what he felt was best so that is what he did. She did get casts on right away then. Originally she was to have half casts for 2 weeks, then get casts in office. Also now she only has the one incision on each foot vs many cuts for the other procedure. Less is better! :)

She is still inpatient but doing well. Heartrate is a little high still so they are watching that. She also had a temp of 101 last night but I did turn the heating pad down so hopefully it was just that and not infection or something bad. She likes to have a heating pad on her thighs (at home we do heated rice bags) and it was turned way up. They did draw labs yesterday afternoon but those didn't show anything of note. They will likely be pulling the drain tubes out today. She is pooping regularly and eating like a champ. It is a lot better than the aftermath of the spine surgery! And a huge relief to me!

I am battling a sinus infection so that really sucks. Today I am on day 4 of antibiotics...I feel a lot better after getting 2 nights of good sleep. I sleep here just great. I put my kindle on "tropical rain" white noise app and nothing wakes me. The bed is lumpy and the shower ice cold....but I now have been walking down to the parent lounge and showering there as the water in there is nice and hot. This morning I stood there for 15 min and let it pound on my face to loosen everything up. I waited to long to go in with all the stress and busyness before her surgery. I went in the day before we came here so I was not in tip top shape, not good. Lesson learned!! This morning was nice, I woke up early since I went to bed super early (as C had gone to sleep early too). I had packed up a bag the night before so I could just grab it and go to the lounge without digging around and waking up C. It actually is nice since I don't have to feel like tiptoeing around trying to not wake her. Got cleaned up and the soreness from the bed pounded out too. I wanted to be dressed and clean before doctors came into her room. The day before I was all grubby and sick when they popped in. I even had time to run down to the café and get a big hot chocolate and egg breakfast so I could take my morning antibiotic (supposed to take with food).

7:30 and she is still sleeping. Nurse woke her up around 6:30 to do vitals and change diaper. Glad she went back to sleep though, it is so healing! I have tons of movies along that I checked out from the library at home. All her favorites! Hopefully she has a good day today. I am not sure if they will send home today or keep one more night. They did say 3-4 days typically so I am prepared for 4. Actually I did pack for 5-6, that is just how I roll! :) I would like to be home sunday though so I don't have to make arrangements for the other kids' activities. It would not be the end of the world, but it is just easier if I am there to do it.

Hope everyone is well....Happy New Year! Hope 2017 is full of good things for us all!
Lisa O.

Oh, Can you believe Caitlin is 16 now?! Where has the time gone....IMG_1511.jpg

Lisa, It's wonderful to hear from you! I've thought about you guys often and prayed that all was well. It does sound like you've been very busy. I'm so glad that spine surgery was successful. So glad that this surgery went well also. She really is a trooper! I hope you both get much needed healing sleep. Kathleen had foot reconstruction last Oct. She had tendon lengthening, Lateral calcaneal lengthening,and medial imbrication. This was done at Shriner's Hospital. It has been life altering for her. She was becoming much less mobile independently and using her wheelchair much more. She couldn't wear her leg brace because her foot would not bend to neutral to fit into it. She was in a long leg non weight bearing for weeks and then a short leg weight bearing for 2 more weeks. Now she hardly ever uses her wheelchair unless it's a really long distance.I hope the healing goes well for Caitlin. And NO I can't believe she's 16! She looks so grown up! hank you for popping in and giving an update. Healing prayers for you both!
Mary Grace

By now, you are probably home and in nursing mode with Caitlin. I am praying that all is going well, and that Caitlin is free of pain, discomfort, and fever. I know you're a pro, and that you have everything in place for Caitlin.

Jim and I have been talking about Caitlin's surgery and praying for her and you and your family. We both comment on what an amazing Mom you are, and we are in awe of how incredibly you manage your four children and very busy life.

I'm so happy that you posted here, as you have been missed. Of course, we fully understand your absence. It's just so nice to have you home again for awhile.

It's great that the hospital is providing upgrades for parents, who are spending the entire hospital stay with their kids. I'm very glad that you were able to shower and connect on the internet. But there's nothing like home sweet home.

Please keep us updated on Caitlin's progress, when you can. We are praying for a rapid recovery and complete success. She looks so wonderful now, so straight, and with this surgery, she will get so much more benefit out of her standing table.

Healing prayers on their way ~

Love & Light,

Rose

Mom to Jon, 48, (seizure disorder; Gtube; trache; colostomy; osteoporosis; hypothyroid; enlarged prostate; lymphedema, assorted mysteries) and Michael, 32, (intractable seizures; Gtube), who were born with an undiagnosed progressive neuromuscular disease and courageous spirits. Our Angel Michael received his wings in 2003 and now resides in Heaven. Our Angel Jon lives at home with me and Jim, the world's most wonderful dad.

Thank you everyone for all the prayers and well wishes! :) We came home Friday afternoon...I was surprised that we got to leave so soon! I would have been fine with one more day, but both Caitlin & I were glad to be in our own beds. She did have a fever that evening and all weekend though. BUT, I believe we caught something viral at the hospital and brought it home with us. She had a little spit up, more of a juicy burp on Friday evening and my tummy was quite sore all day Sunday and I had fever/body aches which did subside by the afternoon after I took Tylenol. I feel much better today and when I put her to bed last night, her temp was 98.5 so hopefully she has worked through it too. She is still sleeping right now (8:09 am).

Her feet look great though! I had to keep her feet elevated for 48 hours after getting home. No big deal for us, we have tons of pillows for when she is in bed, and during the day, she sits in her lazyboy recliner, with an extra pillow under the feet to get the above the heart. Her toes are normal colored and not swollen at all. Last night when I put her to bed, I did not elevate them (better sleep for her when they are just straight). I have to keep a rolled towel under her Achilles area so that pressure is not on the heels. Easy enough. We have been watching a lot of movies and she is happy to play her kindle all day, typical teen! I plan to keep her home from school at least through her follow-up appointment this Friday. They said she could go back as soon as her pain is under control, but with all the junk (viruses and such) going around this time of year, I feel better giving her a good 2 weeks at least of home rest. When I do send her back, it will be for a few hours per day at first and then extending it from there as she is able to tolerate it. We did the same thing after her spine surgery and that worked nice. Everyone was happy....school prefers that vs setting up homebound, I feel she gets more learning done in school, teachers prefer this vs homebound, I can run errands while she is at school, she gets to get out of the house and see friends...but still come home when she is tired out. After the spine surgery, I just did 2 hour school days for her for a few weeks and gradually lengthened. I am glad our school is so nice about all this! IMG_1557.jpg

I did have her IEP right before the surgery. That went well. She will be moving up to the high school next year! Wow! I am not too worried though as Brandon will move up too so it makes me feel better knowing her brother is in the same building. We already know a few of the aides and they are great, plus her van driver is an aide there too and she knows C super well! One potential issue was they brought up transportation...currently, she gets picked up by a van from the high school (it has a w/c lift) at 7:30am (school starts at 7:50) and rides bus home (school is out at 3:10 and she arrives home at 4:20pm...we live 10 min away from school). If she rode the bus both ways, she would be on the bus for over 3 hours a day!!! The morning pickup was 6:25am, which I said no way! It is not even possible for me to get her up and ready by that early time. She needs her sleep, she sleeps 10-12 hours at night and I already put her to bed at 7-7:30pm so I can't really adjust that back to get up earlier in the morning. Not realistic at all and definitely not fair. The problem is we are out on one side of the district and she is the only one out here so they put her as the first pickup, last drop off. Not fair! My compromise over these years was that I know someone has to be last, but it should not be her both ways, so they said they would have van come get her in the morning, everyone wins! Well now, at this IEP, they hinted that they want her to go back to being bussed both ways. I definitely made it clear that I expect her to continue on the van. I would drive her myself before putting her on a bus at 6:30am. That would be a compromise I would agree to, if they reimbursed me for my mileage for driving her in the mornings (this was an option offered back when we agreed to the van originally). We'll see what happens. They got a new director of spec-ed 2 years ago and I know she wanted to get rid of the van but was not able to come up with a good alternative, I did keep and open mind and let her try, lol. I am sure when the number crunchers look at that line item, they think cut cut cut. I will definitely fight that though. I think they were probably surprised how fast I pushed back on that since normally I am pretty easy going about the IEP.

Well, better go peek in C's room and see if she is awake. I like to keep her meds on schedule. Again, thanks for all the prayers and good vibes! Oh, I even figured a way to give her a good bath....I just put her on the bath chair and used a pitcher to wash her hair for real and most of her body. The thought of only sponge baths for 6-8 weeks did not thrill me. She is very oily like me so her hair needs water on it and lots of shampoo!! IMG_1558.jpg

Lisa O.

PS, Mary Grace, I was so glad to see pictures of Kathleen's foot surgery when I scheduled this for Caitlin...I did creep on the site and look those over. Seeing the before and after pics made me feel positive about putting her through this. I think it will be so nice to have her feet go into AFOs nicely again so we can use all the equipment we were given from Tracy!

Thanks for the update! My surgeries are how I became a huge movie buff. So glad you are back home! Good idea keeping her out of school. School is tiring after surgery and if she is tired she might get sick more easily. I hated the crap with buses and IEP so my family drove me back then. :) Caitlin is rocking those pink casts!

Lisa, So glad you're both feeling better. I've seen so many schools get away with ungodly long bus rides for children with disabilities. I wouldn't want my typical kids on a bus that long. It's just insane that they think it's okay.Makes me so angry. I have always driven Kathleen to and from, I feel very lucky that I'm able to do this.
I'm glad the pictures helped. The new AFO that Shriners made for her is pretty awesome too. She doesn't need the long KAFO anymore, it actually helps with the knee hyperextension. Not only did it get her back into her brace she just felt so much better and had so much more energy. I am so glad we did it. Walking without her AFO really sapped her energy even short walks. It was noot going to get any better on it's own. We did a lot of PT also even when she was in her cast we did some things for upper body and even lifting the heavy cast. When the cast was removed she used a walker, and then a cane. I remember those 8 weeks of sponge baths and washing her hair in the kitchen in her wheelchair. Shriners gave us some really good body wipes that I used and then a better sponge bath while on her camode.Thanks for the update!
Mary Grace

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